I seldom talk about my job here or anywhere else, probably because there is so much to say. Words hard to hold back. Moments impossible to ignore, children so inspiring it is hard not to get emotionally carried away.

For the past three years I have hosted an online chatroom five nights a week where I get to hang out and talk to children and teenagers with terminal and chronic illness. Some of them live in the hospital. Some of them live at home. Some of them have a limited time to live. Some have forever, but must live their lives in terrible pain and/or discomfort. In and out of hospitals. In and out of comas. In and out of labs and testing facilities. In and out of, what we might call "a normal life."

And yet they are happy. They are seldom afraid. They are positive and thoughtful and loving. They hug one another with their words. They LOL. They joke about death like it's some kind of punchline and have in three years taught me how to laugh with them. How to be unafraid of death, and more importantly, of life. Living wholeheartedly. Pedal to the metal. They have taught me not to fear illness, no matter how hopeless the odds seem, and not to pity those who I once called "less fortunate." They have taught me not to be afraid for Archer but to enjoy him. They have taught me not to fear giving birth to a child who needs special care. They have turned me into someone who can mourn a death and move on.

This is one of the greatest gifts a person could receive, I think. Not to be afraid. A mother especially.

When Archer was born healthy, I was almost shocked. As a young mother with no parents as friends, all I had known were sick children. I felt like I had won the lottery having a healthy baby. I wondered, "why me?" Why am I so lucky? Because I was. I am. So lucky.

Quite often there are children in the chatroom who disappear. I like to think that maybe they healed miraculously and no longer need us. I like to imagine their tumors shriveling, their cancer cells blowing away like dried leaves. I often pretend that Pediatric HIV and Muscular Dystrophy and Cystic Fibrosis are like colds, soon to pass after some rest and chicken soup. That when the children disappear from the chatroom they will reappear in school, Jansport backpacks and books under their arms. Back to health. Back to normalcy. Back to cute boys and baseball and Winter Formals. Back to childhood.

One of my favorite children recently disappeared. She has stage four Leukemia but we don't talk about that. For the past two months she has logged on when I work and we have talked. About everything. About cupcakes and cute boys and riding horses. We've danced and played games and wrote silly raps. We made-believe I could bust her out of the hospital so we could spend a day at the beach. She hadn't been to the beach in two years. She hadn't been out of her hospital room in months. At age 13, the last time we spoke she was 48 pounds. Part of her brain was missing and even still, she was brilliant. Her heart had been replaced and yet she had more love inside of her than almost anyone. Her legs were too weak to walk on, yet she had the power to move everyone around her.

Wherever she is, I am at peace. If she does not come back, I am at peace.

Before I was a mother I wished with all my might that the children would survive so they could have lives of their own. Now, as a mother I wish for their parents. I wish for their strength and for their ability to reach beyond the fear and to know how lucky they are to have known and birthed such extraordinary human beings.

When I found out I was pregnant, I had the same fears all mothers have. Will he be healthy? Will everything end up okay?

A mother's worst fear is of course that he will not be okay. It is unnatural for a parent to bury their child and yet women have been doing so from the beginning of time, finding the strength to move on because we have the capacity to do so. We do. The reality is that there are many children in pain. That they suffer, that they die.

And yet we keep turning away when we see it walking down the street. It keeps us safe and our children and our families. Ignore the symptoms. The sick belong in the hospital. Wear a mask.

Every time a head is turned, a child feels more isolated. It isn't real. Like the monster under the bed. I need a nightlight and a pillow for my eyes. Mommy? Make it go away.

Disease is all around us. Children are dying. Don't look away. Don't pretend it isn't so. Don't hide the truth from your children.

When you hide the truth from your children, they think its okay to turn away.

The organization I work for was launched so that sick children could interact with other children like them and feel less alone. It's very common for a sick child's friends to abandon him because they are afraid of what they don't understand. This is natural. A child cannot be faulted for being afraid of chemotherapy or paralysis or losing a friend. It is up to the parents to educate the children. This is not something they teach in school.

Ignorance keeps inspiration from happening. Ignorance separates the sick from the healthy when there is so much to learn from either side. The sick depend on the healthy for physical survival but the healthy do not look to the sick for emotional healing. And we should. It is impossible to be depressed around a beaming child who, unafraid and uninhibited will ask you to dance with her in her hospital gown. It is hard to be afraid when those we expect to tremble take our hands to hold us in place.

"Everything is going to be okay, I promise." Sometimes the children say this to each other. Sometimes they say it to me.

Their screen names are livelife and allsmiles and sunshine14. They do not take life too seriously. They do not point fingers or put blame on things like adults do. It is not anyone’s fault that a child is born with HIV. She does not think so. She thinks she is lucky for having the strength to take on such a challenge.

Children are not jaded. They do not live in denial. Never once has a child said "why me?" Never once has a child wished he/she had never been sick. Not in three years.

"I am not afraid to die. I am afraid for those I will leave behind."

"Because my mother's in denial."

"My father's in denial."

"My parents and grandparents are in denial."

Turn away, toward the light, where everyone is healthy and alive and enjoying their macaroni & cheese. Where children live to become adults and mothers give birth effortlessly to healthy babies. Ten fingers. Ten toes. Turn away from the bald child in the supermarket. You don't want to stare. You don't want to know. Wait, you looked. You shouldn't have looked.

Sometimes it's better to stare than to ignore.

Because every day, there are children disappearing. They disappear from our chatrooms, passing from one world to another. They disappear in the grocery store when we pretend we don't see them out of the corner of our eye. They disappear when we cannot bear to look the truth in the face and see that sickness is everywhere. That even when our children are healthy, there are parents who aren't so lucky.

We can prepare ourselves for cancer in adults. Wear bracelets. Create Cancer Awareness months, but what of the children? Why can't we be just as aware that there is such a thing as Hepablastoma? Why can't we talk about it openly? Like we do with Breast Cancer and MS and Parkinsons? Why must we turn away instead of discussing the tremendous grief we feel when a friend's newborn child is diagnosed with a chronic illness, when God forbid the baby does not have ten fingers and ten toes? But I don't know what to say. Only because you don't want to know. Because it can be hard to know. Because it is a parent's worst nightmare...

But what if we discussed it openly? Perhaps if we weren't so afraid. Think positive! Think positive! It won't happen to me, or my child, or my child's friends...

Open your eyes. There are children who are sick and different and in pain. There are children in need of heart-transplants and kidneys and hugs from their peers who turn away, unable to handle the truth. Here. It is happening now! In your own neighborhood.

Please don't let the children disappear without acknowledging them first. Please don't hide the truth from your own kids. Please don't tell them to look away, from Leukemia and Pediatric HIV and Sickle-Cell Anemia. From Cystic Fibrosis and Crohns disease and Muscular Dystrophy, Lymphoma and Neuroblastoma and the countless other pediatric diseases.Every time you look away, the children disappear.

We will always be afraid of what we don't know or can't understand so we must educate ourselves and try to be more understanding, so we can pass that on to our children, children who right now are turning away at the sight of a bald child in a wheelchair, because it isn't nice to stare.

I am the luckiest woman in the world to have been able to meet the children I have met. I am so lucky to have the perspective. To have been given the gift of reality. Of seeing sickness every day.

Because it's everywhere. Because we should not be afraid of what we do not understand. Just because there are shark attacks, does not mean we shouldn't go night-swimming. Just because there are plane crashes doesn't mean we should not see the world. Just because there is illness and sickness and children born with health problems does not mean we should be afraid for our futures. Just because there is death does not mean we should turn away from life...

These are the words of the children I have met, children who aren't afraid of death, but are afraid of disappearing, children who have more strength than we can possibly imagine and who, if given the chance, can tell us, "everything is going to be okay."

Let us open our eyes for them. And let us open our eyes for our sakes as well, because they're right, everything is going to be okay.

Becca, what a wonderful and powerful piece! Thank you so much for speaking up for the children. Sometimes when people meet me, they act as if I have a disease or they are so sorry for my suffering. WTF? I'm deaf, not "death" like some people pronounce it. Ignorance is a huge presence in our culture and we must chisel that big mofo until it's gone! =)

Wow! This is such a timely post for me in this respect -- my six-year-old daughter has been asking a lot of questions lately about illness and death. I know that's normal for this age. She has been particularly interested in a story she apparently heard from someone at school that they knew an eight-year-old girl who had died.

My gut impulse has been to put the denial spin on it, but I haven't. We've had some good talks (to the extent you can with a girl who is 6) that sometimes children do get sick and die. I don't want to lie to her or make her turn away. Our parents did that to us and I'm not sure that was a good thing. If I can help her to embrace the truth about life, including the fact that people we love die and don't come back, then I hope her life can be lived in a more meaningful way as she grows up.

Wonderful post! I work with the elderly in my day job, but I also volunteer on my weekends to do Pet Therapy with my dogs. One of the places we visit is an Inpatient Children's Psychiatric Unit for kids with psychiatric illnesses. Ages 2 (!!) to 16. Some of these kids NEVER have a visitor. Many of them have never held a soft, warm, sweet smelling puppy before. They are truly the kids that society shuns. They are locked away. Sometimes it is so hard to visit, but I know in my heart that they benefit from it. Before we volunteered, they had never been able to find anyone else to do it.

I have a lump in my throat from your beautiful words. I have a friend who works as a nurse in the children's cancer hall at Barnes Jewish Hospital here in St. Louis, and she talks a lot about how inspiring her kids are to her, and how they've changed her own life. It takes special people like her and you to look past the pity people feel for sick children and see the wonderful, strong, and healthy side of these kids. They are people, not sicknesses, and I for one will do as you say and not have Gabe look away. I will tell it to him straight that illnesses happen to anybody and instead of being scared of them, these kids are strong enough to live their lives in spite of them. That's something worth celebrating, not looking away.

I'm so glad that you are out there because you amaze me every single post. Thank you for sharing this part of your (and their) life (lives) and my admiration of you has grown so big I might have to get a new apartment just to contain it.

The thing is that many of these kids were once "healthy kids" too. Their parents probably were thankful at their luck in having such healthy babies.

You have such a special gift, and you know it. You are compassionate and imaginative and you are doing a wonderful thing for the children, but even more so for the rest of us in sharing it. We've all got to work on the fear.

In the last twelve months between online and real life friends I have witnessed the loss of 17 children. Many who barely survived the first few days of life, the oldest was 12. Each taught me (and enraged my view of life, universe and everything :-(!)something... sometimes it is hard to watch someone disappear. Sometimes it is so gentle and peaceful it reminds us that this is what it should be like (the 8 year old daughter of a friend was this lesson). Thanks for sharing your lessons. I hope that your young friend went gently and peacefully to her next place... sounds like you two had a good time in this "life". k

Kendra
| 11:06 AM

This has to be one of the best posts I've read. I work in a Children's hospital and these kids are part of my everyday life. People ask me all the time how I can work in a place like this, where kids are so sick. I tell them - kids are resilient. They don't moan and groan like some adults may. They ask for movies and video games and art projects. They hug their parents and their doctors, their nurses, their therapists, the volunteers. Bald kiddos are nothing new. I do stare when they DO get hair....."Where did you get all that hair?" Lately, this has hit quite close to home. My 6yr old son has a friend in our neighborhood who has a very rare form of cancer. I worry about what might happen and what I might have to tell my son. His little firend has completed his chemo, radiation and surgery. My son asks if it hurts when you hair grows back. Thank you writing this post and for not looking away. Thank you for being a friend to these kids.

Aline
| 11:09 AM

W-o-w.

Excellent message and excellent post. I volunteer weekly with Girl Guides of Canada (like Girl Scouts), and I will be taking this message back to them. Thank you for giving me the perspective to help a group of girls broaden their horizons.

I'm currently growing out my hair with the intention of donating it to either Locks of Love or a similar foundation. It's a really neat feeling to know that the hair I brush before bed every night and wash every morning will be treasured by a child and it will make their life a little more manageable.

Cheers to you for working for this great foundation. I'm going to check out their webpage!

I only found out you did this job after Sonny was born. Born beautiful but not 100% healthy. I'm still scared but put a very good face on in front of my other children and they are not scared or perturbed in the slightest that Sonny will be special. When I told Ruby that Sonny had a small thumb, she asked in astonishment 'where????' We all laughed so much when Jim convinced her it was growing out of his side. She believed us and was so curious to see. She has a friend in school in a wheelchair who is blind amongst other things (I really dont know full extent)and Ruby wants her hair cut like this girls, she wants a wheelchair and she plays with her and explains to other, smaller children that when this little girl hits them or bites them that she doesn't mean it.

Maybe Sonny has been born into our fmaily for a reason. I would hate to think of him being anywhere else quite frankly. And I bloody love his little thumb and furry ears!!!! :)

I know exactly what you mean because I used to work there, too! It was called Starbright at that time and I was the content editor for Starbright World - in charge of writing witty banter and finding fabulous content for the kids searching for distraction from their pain and loneliness. And I agree with you - I LOVED their stories. I would chat with them and video conference and just laugh my head off at their humor and lust for life. It changed the way I see the world. It made me sad, yes - but it made me hope. Hope for us who are still here, who are still healthy. Hope that we could maybe make the life of one sick kid better, if even just for an afternoon.

Thanks for writing about this! I'm so glad to hear that Starbright (or I guess, Starlight Starbright now) is still thriving and helping kids!

Thank you for this beautiful post. I'm one of the unlucky ones that have lost a very young (just 5) child to Burkett's Lymphoma. Nobody knows how to talk about it, so we just don't. Ever. Because when we do, it immediately changes us from the fun nice cool family to the OH Poor Them family, and we don't feel that way at all. So not talking about it is a way to not only preserve our privacy about a tragedy that happened long ago, but also to preserve how people treat us once they find out, if they do. Does that make sense?

Margalit- Yes, it totally makes sense and I'm sorry for your loss. Moving on is important for sure, but like you said nobody knows how to talk about it. I just wish we did "know" without feeling "sorry." I wish we could be more practical, dwell on the footprints instead of mourning the shadows. I wish you didn't have to preserve how people treat you. I wish they could naturally treat you as they would otherwise. I don't know if this is possible, however, or if it ever was.

They are so great, it's true. I remember so many of the kids from my hospital volunteer years being really wonderful kids, and a child in my grade 5 class who died of cancer but was never seen without a smile and some cool new saying or idea. They just are who they are, and all the medical stuff is taken in stride, external to them, really.

Not like grownups, who tend to do a lot of whining and why me-ing and what if-ing and feeling very sorry. Perhaps we have more understanding, perhaps we have no perspective, perhaps we have just lost the fearlessness of the young.

Here's my dumb anecdote about learning to see the person behind the disease. When I was a self-conscious ten-year-old I was in a summer writing class in which the instructor assigned summer partners. There was a skinny, bald girl with a scarf on her head in the class and like a typical 10-yr-old conformist I remember thinking "oh please don't let me get the weird scarf girl." I did and she turned out to be brilliant and funny and kind and a great friend to me all summer. I never asked her about the scarf, but at the end of the class I read the biography she published in which she talked about her leukemia. That was a great lesson for me about seeing the girl and not the disease. I needed that lesson when I was ten. Thanks for the reminder today.

That was hard to get through, but it was worth it. Very worth it and absolutely beautiful. I grew up in the epitome of 'normal'. Normal family, normal friends, normal classmates. People like me who grow up normal need to be prodded into awakeness. Societies who hide these faults and sadnesses need to be kicked there.

Wow GGC, that was moving. As someone who struggles with fear and anxiety, reading this gave me comfort. We don't like to talk about the ugly things in life, and losing children is probably one of the ugliest, because they don't yet know what they are losing. But then you say this and I think, well that's a good thing. Because they have an inner peace that the rest of us struggle desperately to achieve. Thanks.

What a wonderful post. My husband has CF and is now 35 years old. Sometimes, they don't disappear and the wish comes true. He told me he always wanted the "normal life stuff" - the house, the car, a job, a dog - normal stuff. That's the life we've made and we're so very lucky. We don't know (who ever really knows?) how long we'll have this life, but we'll enjoy it while we can. And whenever we can, we reach out to others trying to do the same thing.

Wow...how great to have this perspective. And how heartbreaking at the same time. I think almost daily about how lucky I am with the healthy kids I have. We did the testing and were told our child would possibly have CF. Turned out my husband is not a carrier.

My son had several ear infections and needed tubes by 10 months. This was stressful to me...I can't fathom having a child with a more serious illness.

And I try to make it a point to talk to my friends who have lost children about those kids. I'm sure I'm not doing it just right, but I figure it's better than pretending that the pregnancy and/or child never happened.

I just wanted to tell you that I know I'm not a mother, but I was moved to tears. You brought up many things I hope to change in the future with my book. Before I was a host, I was the girl people would shy away from and ignore because like you said, people want to pretend it doesn't exist. When I was diagnosed, all but 2 of my friends disappeared and I never had visitors in the hospital and they were very few and far between when I was home. I agree with you that the truth should not be hidden. This is a reality. When I think back to when I met you, I was still going through intensive chemo and I was pretty sick and weak. I always thought the hosts were more than just a "chatroom monitor" and I loved talking with them. Through our conversations, I was able to laugh again and not feel isolated. Now being on the other side of it, I tell people about my job as a host and they say how cool it is that I get to spend hours talking online and it's so easy. It's not. Sometimes it's very hard because I've lived through what some of these kids are going through. But it's also the greatest job in the world because these kids are a constant source of inspiration. You're entry was beautifully written Becca. I love you!

xoxo

Anonymous
| 5:49 PM

Rebecca,

I am one of those mom's with a child with disabilities. I appreciate every tiny accomplishment and have a new view of the world. My little guy has given me the ability to look a sick child in the face and smile. Three years ago I would have turned away from a bald child in the supermarket. My son has changed all that and I am eternally grateful.

I just want you to know that you are such an inspirational soul.I know you are so young, but I am always astounded by your intellect and insight into issues big and small. You are destined for greatness--that I can assure you.

You are an amazing, honest and of course highly fashionable Mom-- and the world is a better place with you in it.

Really powerful post. Two months ago, my cousin's three month old diagnosed with neuroblastoma and for the week after I found out, I didn't call her (she lives in another state) because I was scared about what to say to her. After a week of avoiding her, i started feeling even worse, like I should be there for her, she's always been there for me, so I called her and we had a great talk, and she said a lot of things that she had been holding in because none of her friends had called her, and I was really glad to did it. The good news is that her son is doing well right now.l He had an operation and they were able to remove the cancer from his kidney and they think he is going to be all right.

And this acknowledgment doesn't just apply to children. My friend who is my age was diagnosed with leukemia and she said a lot of people dropped off her radar, including her long time boyfriend. So don't forget your adult friends, either.

Beautiful! When got diagnosed with cancer, about half of my friends disappeared. Some of them said (to other people) that they didn't know what to say to me because I might die. Someday we will all die though, so if we avoid talking to someone because they "might" die, we would all have to stop talking!

Wow. Thank you for sharing this very important part of your life and bringing up this issue. I am so glad there are people like you who have the heart and strength to "be there" when people need it most. I have often thought about volunteering at the children's hospital here but if I'm honest with myself, I am scared. Your post definitely has made me think a lot about that fear. Thank you.

Yikes, this post should have a kleenex warning! You work for Starlight? I LOVE Starlight. Everytime they wheel one of those video game machines into my son's room during one of not infrequent hospital stays, I say a prayer of gratitude that someone cared enough to try to make it easier for him. Thanks for everything you do. I don't want my son to disappear.

What a powerful message. I am so glad to have found your blog. My son has celiac disease and one of the long term consequences of untreated celiac is cancer - I am so dilligent about his diet - and it should be so hard on a First Grader to not be able to eat the treats and everything that other kids bring in - but he has always been really good about his diet and understands that if he eats normal food he will get sick. I don't want him to be one of the disappearing children. Thanks for reminding us to notice the children before they disappear.

I am late to read this but I am so glad I did. Thank you for sharing your love and your heart with these very special children. I can't think of a more rewarding, yet heartbreaking, thing to do. And thank you for sharing the information. I'm reading this at work and I can tell you I'm trying like hell not to cry but the hot tears are welling up.

Thank you again for sharing this...I had no idea you volunteered for this group. It sounds wonderful.

This is such an amazing post. I won't ever forget now to really see those children. And to make sure my kids see them too.

Heather Pearson (hetty)
| 3:47 PM

Beccca, i love ya lots... you are the best host ever. you have helped me to be positive even when i am at my weakest point you are there to listen and make me feel better love ya becca

Anonymous
| 6:45 PM

Thank you from the bottom of my heart for writing this. It is happening everywhere, and the wounds are so much deep since other refuse to see them.

Nikki (crohnie4life)
| 8:20 PM

Becca you were an AMAZING chat host. I miss you dearly.. I really, honestly do. There isn't a day that goes by that I don't think about you and how you are. -hugs- So gald I got to know you through SBW.Us teens at SBW never thanked you enough. You definatly had a huge impact on our lives. I can't thank you enough. This blog nearly made me cry.. I love you bec

Anonymous
| 3:47 PM

I know I am....ummm, YEARS later reading this, but I found this post via your "best-of" post today.

Without telling my whole story, I just want to sincerely say...thank you for writing this. Thank you, thank you from my heart. (I know that sounds cheezy but it is the only way I can express it).

I hope it is some comfort to you that years later, your words are touching people. They have to me. ~R